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      Measuring Habitual Physical Activity in Neuromuscular Disorders: A Systematic Review

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          Abstract

          Background: Free-living or habitual physical activity (HPA) refers to someone’s performance in his or her free-living environment. Neuromuscular disorders (NMD) manifest through HPA, and the observation of HPA can be used to identify clinical risks and to quantify outcomes in research. This review summarizes and analyses previous studies reporting the assessment of HPA in NMD, and may serve as the basis for evidence-based decision-making when considering assessing HPA in this population.

          Methods: A systematic review was performed to identify all studies related to HPA in NMD, followed by a critical appraisal of the assessment methodology and a final review of the identified HPA tools.

          Results: A total of 22 studies were selected, reporting on eight different direct tools (or activity monitors) and ten structured patient-reported outcomes. Overall, HPA patterns in NMD differ from healthy control populations. There was a noticeable lack of validation studies for these tools and outcome measures in NMD. Very little information regarding feasibility and barriers for the application of these tools in this population have been published.

          Conclusions: The variety and heterogeneity of tools and methods in the published literature makes the comparison across different studies difficult, and methodological guidelines are warranted. We propose a checklist of considerations for the assessment and reporting of HPA in NMD.

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          A comparison of direct versus self-report measures for assessing physical activity in adults: a systematic review

          Background Accurate assessment is required to assess current and changing physical activity levels, and to evaluate the effectiveness of interventions designed to increase activity levels. This study systematically reviewed the literature to determine the extent of agreement between subjectively (self-report e.g. questionnaire, diary) and objectively (directly measured; e.g. accelerometry, doubly labeled water) assessed physical activity in adults. Methods Eight electronic databases were searched to identify observational and experimental studies of adult populations. Searching identified 4,463 potential articles. Initial screening found that 293 examined the relationship between self-reported and directly measured physical activity and met the eligibility criteria. Data abstraction was completed for 187 articles, which described comparable data and/or comparisons, while 76 articles lacked comparable data or comparisons, and a further 30 did not meet the review's eligibility requirements. A risk of bias assessment was conducted for all articles from which data was abstracted. Results Correlations between self-report and direct measures were generally low-to-moderate and ranged from -0.71 to 0.96. No clear pattern emerged for the mean differences between self-report and direct measures of physical activity. Trends differed by measure of physical activity employed, level of physical activity measured, and the gender of participants. Results of the risk of bias assessment indicated that 38% of the studies had lower quality scores. Conclusion The findings suggest that the measurement method may have a significant impact on the observed levels of physical activity. Self-report measures of physical activity were both higher and lower than directly measured levels of physical activity, which poses a problem for both reliance on self-report measures and for attempts to correct for self-report – direct measure differences. This review reveals the need for valid, accurate and reliable measures of physical activity in evaluating current and changing physical activity levels, physical activity interventions, and the relationships between physical activity and health outcomes.
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            Limits to the measurement of habitual physical activity by questionnaires.

            Despite extensive use over 40 years, physical activity questionnaires still show limited reliability and validity. Measurements have value in indicating conditions where an increase in physical activity would be beneficial and in monitoring changes in population activity. However, attempts at detailed interpretation in terms of exercise dosage and the extent of resulting health benefits seem premature. Such usage may become possible through the development of standardised instruments that will record the low intensity activities typical of sedentary societies, and will ascribe consistent biological meaning to terms such as light, moderate, and heavy exercise.
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              Dimensional assessment of chronic fatigue syndrome.

              The absence of laboratory tests and clear criteria to identify homogeneous (sub)groups in patients presenting with unexplained fatigue, and to assess clinical status and disability in these patients, calls for further assessment methods. In the present study, a multi-dimensional approach to the assessment of chronic fatigue syndrome (CFS) is evaluated. Two-hundred and ninety-eight patients with CFS completed a set of postal questionnaires that assessed the behavioural, emotional, social, and cognitive aspects of CFS. By means of statistical analyses nine relatively independent dimensions of CFS were identified along which CFS-assessment and CFS-research can be directed. These dimensions were named: psychological well-being, functional impairment in daily life, sleep disturbances, avoidance of physical activity, neuropsychological impairment, causal attributions related to the complaints, social functioning, self-efficacy expectations, and subjective experience of the personal situation. A description of the study sample on these dimensions is presented.
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                Author and article information

                Journal
                J Neuromuscul Dis
                J Neuromuscul Dis
                JND
                Journal of Neuromuscular Diseases
                IOS Press (Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands )
                2214-3599
                2214-3602
                28 February 2017
                2017
                : 4
                : 1
                : 25-52
                Affiliations
                [a ]John Walton Muscular Dystrophy Research Centre, MRC centre for Neuromuscular Disease, Institute of Genetic Medicine, Newcastle University , UK
                [b ]Movelab, Institute of Cellular Medicine, Newcastle University , UK
                [c ]Institute of Neuroscience, Newcastle University , UK
                [d ]Institute for Ageing and Health, Newcastle University , UK
                [e ]Neuromuscular Physiology and Evaluation Lab, Institute of Myology , Paris, France
                Author notes
                [1]

                These authors contributed equally to this work.

                [* ]Correspondence to: Professor Hanns Lochmuller, Institute of Genetic Medicine Newcastle University, International Centre for Life Central Parkway Newcastle upon Tyne NE1 3BZ, UK. Tel.: +44 0 191 241 8602; E-mail: hanns.lochmuller@ 123456ncl.ac.uk .
                Article
                JND160195
                10.3233/JND-160195
                5345641
                28269791
                62084ba4-dc95-4a9d-9e40-08e534c38d08
                IOS Press and the authors. All rights reserved

                This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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                Research Report

                physical activity,daily activity,exercise,activity monitor,neuromuscular disorders,muscular dystrophy

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